I miss having the security of a steady liveable income

March 10, 2015

Sometimes I forget what it was like to have a steady liveable income. My new “normal” has become so ingrained, it’s easy to think that’s how it always was. Then I’ll wish I could buy a new sweater, for example, and I’ll remember there was a time when I really could buy a new sweater any time I wanted to.

This is one of those things that can be hard to understand until you live it. Politicians talk about cutting social security disability payments because they see the huge amount the program costs overall. They don’t consider what it’s like for an individual to have to actually live on the average payment of less than $1200 per month. (Full disclosure: my payments are above average. Of course, the cost of living in my city is also above average. I haven’t done the math to figure out if the ratios are the same or not.)

Of course, it’s all relative. There are people who aren’t on SSDI who only earn that much. There are people who earn $150,000 per year and are in debt. The former has their own set of issues that need addressing on a federal and state level. The latter has options, though. I miss having options.

Once upon a time I earned around the average national income of $50,000. Even in one of the most expensive cities in the country, I had no problem living on that salary. I just avoided spending money on certain things. I saved money every month. So while I couldn’t shop endlessly or at high-end stores, I could definitely afford to replace worn out clothes. That was my “normal” for many years.

It’s been a cold winter and that’s fine by me! The cold is much better for my body than the heat, so I’m happy about it. But unfortunately, my wardrobe is not. I have many t-shirts, but not many sweaters. The ones I have are old and out of style. Some are falling apart. They are pilling and developing holes. But I keep wearing them because I don’t have a lot of options. Sure, I have some savings, but SSDI only covers about half of my expenses each month and I need my savings for that other half. I can’t go throwing it around on clothes that I don’t really have to have.

It’s not the clothes that I miss, it’s the ease of of those purchases. It’s knowing that any money I spent would come back into my bank account and then some. It’s knowing there was always more where that came from. It was knowing that I had years, decades, to keep earning and saving.

And that security is what’s really been taken away.

Despite what certain politicians think, I would rather be working if it meant getting that security back. But the truth is, that’s just not an option for me right now.

6 Comments | Expectations, Frustration, Job, Limitations, Politics, Rants, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

6 great things about not working

February 25, 2015

Lately I’ve been thinking a lot about how much I wish I could work.* I want to get off benefits and be independent. I want to be able to buy a new sweater. I want to move to a new apartment and afford the neighborhood I like.

Those desires are all well and good, but they don’t change the reality. The reality is that I’m not ready to work yet. The 2015-01-28 08.31.11reality is that when I do return to work, it will probably be for about 5 hours per week at a low wage. I still won’t be able to afford my current expenses, never mind adding any to the list. And I can’t change that right now.

So as long as I can’t work anyway, I might as well focus on the good things about not working. Here are just a few:

  1. No commute! Not having to deal with traffic and/or crowded trains is fantastic at any time of year, but Boston has been buried under snow recently. Streets are narrow, parking is impossible, trains are breaking down, and commuters are miserable. Then there’s the ridiculous amount of time spent commuting each week. I’m glad to avoid that mess!
  2. Avoiding crowds and long lines! When I worked, it was always at a 9-5 kind of job. That means I did errands when most people did them: in the evenings and on the weekends. Since I’m not working, I make sure to only do errands on weekdays, and it’s great! There’s little traffic and few lines. Things like grocery shopping are so much easier when the roads and stores are mostly empty!
  3. Lounging in bed! Sometimes I have plans of some sort, but most mornings I have nowhere to be. I wake up to an alarm to keep myself on a certain sleep schedule, but then I lay around reading until I feel like getting up. This morning I spent 1/2 hour in bed fantasizing about what I’d do if I won the lottery. Because why not? I get up when I feel like it and not a moment before.
  4. No bad bosses! I’ve had my fair share of lousy bosses over the years. There was one good boss, and I loved that job. The others were horrible. It’s easy to forget about those crappy bosses sometimes, but when friends complain about their bosses, I remember how miserable it was. And I’m thrilled that I don’t have to do deal with their bullshit anymore!
  5. Skipping lousy weather! Sure, sometimes I’m seeing a friend or going to the doctor, but most days I have a lot of flexibility in whether or not I leave the house, or I can change things. I watch friends complain about going to work in downpours, blizzards, blistering heat, and arctic cold, while I enjoy my cozy apartment. If I have plans with friends and we see bad weather in the forecast, we just move things to a different day. Easy! I rarely go out in bad weather if I don’t want to.
  6. My time is mine! I remember those bullshit meetings where we all sat around talking and nothing useful got done. I remember sitting at my desk with nothing to do, but not being allowed to leave. I remember having to schedule time to use the bathroom. I remember getting chewed out for being 5 minutes coming back from my lunch break. And I don’t miss any of it. Now I spend my time how I want to. Ok, I can’t always do the things I want to do, but at least those limitations are set by my body (or some other reasonable source) and not by some boss or company. I do what I want to do when I want to do it and I don’t need to get permission from anyone. I feel free!

I can think of so many other great things** about not working, but these are definitely some of the best. When I think about these, I’m glad not to be going in to an office every day. Sure, a salary would be nice, but since I don’t have that option, these reminders sure help to lessen the sting!

What about you? What are some things you don’t miss at all about working at a job? Let’s get a list going in the comments!

*Note: When I talk about “work” I mean at a paid job. Obviously we all work a lot on maintaining our health, managing our households, navigating doctors and insurance companies, and so much more. Unfortunately, we don’t get paid for that kind of work.

**Note 2: I intentionally didn’t mention how great it is to have the time and flexibility to take care of my health. I think that for a lot of us, that’s a given. Trying to get time off for doctor appointments, ducking out of meetings to take medications, not being able to each the provided food at a lunch meeting and all the rest was frustrating, stressful, and detrimental to my own self-care. I could write an entire post just on that. Maybe one of these days I will. For now, I decided not to get distracted with this, but feel free to mention it in the comments if it’s what comes to mind for you!

4 Comments | Decisions, Expectations, Isolation, Job, Limitations, Raves | Tagged: , , | Permalink
Posted by chronicrants

Feeling figuratively itchy

February 8, 2015

I have this itch I can’t scratch and it’s driving me up the wall. It’s a desire to do something!

How do you spend your days? Think about it. Now ask yourself, could you be doing more?

For a long time, my answer to that last question was no. I was doing all I could. Well, I was doing enough, anyway. I was working, socializing, volunteering. I was sick and trying to take care of myself. I was spending hours dealing with lawyers, insurance companies, and benefits. I was seeing many doctors. I was doing combinations of these. But now, suddenly, I’m not doing any of them Well ok, I’m still seeing doctors, but not as often.

The insurance nightmare is over. I’ve received all of the benefits I’m eligible for. My health is stable enough. I have some more research to do and some more treatments to try, but they’re on hold as I adjust some of my current meds. On top of all of that, miraculously, I’m feeling better! I’m able to do more each day than I could a year ago. I still need to rest, but usually for only a day or two at a time, which is a big improvement. Sometimes just half a day of rest is enough. I have more time. And when I’m being productive, I’m able to think more clearly. My memory still has gaps, but they’ve shrunk a bit. For the first time in a long time, I feel like I have the potential to do more!

So you may be wondering what my problem is. Well, it’s simple: I feel like I have potential, but I’m not confident that I really do. And if I do something to earn money, and I lose benefits, it would somewhat defeat the purpose of working.

I mentioned the other day that I want to get a new apartment. I’ve been looking at apartments and each time I do, I’m completely exhausted and need to rest the next day. This is a physically and emotionally tiring process, but it’s short term. In a few months, hopefully, I’ll be mostly unpacked in my new home. Still, if this is so exhausting, then can I really manage even a part time job? I don’t want my health to backslide. I also don’t want to lose my new-found ability to take care of myself properly, lose my ability to socialize, or lose this feeling of actually feeling ok a lot of the time.

Another other thing that’s on my mind when I look at apartments is the cost. Right now, I’m pulling money out of savings every month. That’s ok for a while, but at some point I’ll run out of savings. My social security payments can cover my rent or all of my other expenses. (Yes, my rent is almost exactly half of my total monthly expenses.) So any rent will be too much. Still, I’m trying to find something slightly cheaper than my current place, which isn’t easy to do around here. At the end of the day, I know I need to earn some money to go towards my rent. Let’s say I can manage to earn $1000 per month eventually. That’s not enough for me to lose my social security, but I’m guessing I’d lose my food stamps and fuel assistance. Once I account for the loss of those other benefits, it would be like I was only earning $750. So I’d be putting in $1000 worth of effort and time to only getting $750 in return. That’s hard to swallow. I need to figure out a way to earn that $1000 with as little time and effort as possible to make it worth it. And then I still wouldn’t be breaking even, either. But I’d be closer.

I want so badly to do something useful. And I know I need to get paid for it. I also know I need to wait. I need to wait until I’ve figured out the financial angle and until I know my health is stable enough. So I’ll wait. I wouldn’t want to try any sort of work until after I move anyway. But still, there’s this feeling, this need, to do something. Because it’s been a long time since I’ve had that option. And deep inside, I have the fear that this almost-ability won’t last long, so I better seize the chance while I can.

But I need to wait.

Hence the itch.

2 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Job, Rants, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

The new meaning of “Can I afford that?” when you live on SSDI

January 23, 2015

A friend just emailed me about a good deal on something I’d like to buy. But can I afford the $72 for 20120809_220808something that I don’t really need? Yes and no.

I’m one of the lucky ones. I was raised in a middle class family. When I was born my parents started a college fund, and I graduated from school without any debt. Actually, I had money in the bank because I’d learned to save what I earned from my various jobs. I was taught to never spend more than you had. Credit cards were to be paid off in full every month. I worked all through graduate school and never paid a dime in tuition. I had plenty of problems in life, but I never had debt. I feel so fortunate for that, I am so thankful for the good money lessons my parents taught me.

So when I had to leave my job due to disability, I had savings. Many people don’t. And I managed to get SSDI. Many people don’t. I am so grateful for all of that.

But for the first time in my life, money began to stress me out when I left my job. From the time I started babysitting at age 12, I’d always worked. I’d always had a way to earn money. Sometimes I worked part time, sometimes only on school vacations, but I always worked. Several years back I quit a job where I was unhappy and it was my first real break, but I had planned for it, I had savings, and I was highly employable, so I knew that I could get a job whenever I wanted and needed it. After some time off, I went back to work. I never earned a high salary, but I was frugal and I saved.

When I became too sick to work, though, it was all different. Not having the option of going back to work was stressful. There would be no way to replenish what I spent. That savings account is a huge comfort, but it won’t last forever. And then what?

SSDI is helpful, but it’s not enough. It almost covers my rent. Almost. I have food stamps that almost pay for my groceries. Almost. The extra rent and grocery costs are about $100 every month out of my savings account. Every single purchase beyond my rent comes out of my savings account. Electricity, gas for cooking, car insurance, gas for the car, phone, internet, very limited entertainment, and occasional clothing all come out of my savings account. And medical expenses. Oh, the medical expenses.

Each time I consider if I can afford something, I know that technically I can. Technically I have the money sitting in my savings account. But I also see those savings going down every month. I don’t know if I’ll ever be able to earn more than I spend. So should I save that $72 for the future? And what about the present? There are doctors and medical tests that I think might help but that I’m putting off because they aren’t covered by insurance. Of course, those are hundreds or thousands of dollars, not just $72, but it’s the same idea. If I’m not pulling money out of savings for those doctors and tests, should I really do it for something more frivolous? And if I really wanted to pull money out of savings for something fun, I’d get a pet. But I can’t pull money out for those big things, so getting something little might be fun and comforting. Or I could spend even less and get something else I’d really like, like a new sweater. My clothes are all old and out of style and starting to get threadbare. But even if it was only $30, I would still have to take that money out of savings. And that brings me back to the start of my reasoning: technically I can afford it, but I probably shouldn’t.

Each little “just this once” adds up. $72 here, $15 there, and my savings account keeps shrinking. I’m so grateful to have that account. I want to make it last as long as possible.

Then again, maybe I’ll just take $1 out of savings and go buy a lottery ticket. Then maybe I could afford it all.

2 Comments | Decisions, Expectations, Frustration, Job, Limitations, Rants | Tagged: , | Permalink
Posted by chronicrants

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